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Where can I find help???

Posted , 8 users are following.

emma83518
emma83518

Hello, I am undiagnosed as yet (after 6 months of various tests...) and the symptoms I have seem to match with Chronic Fatigue Syndrome or Fibromyalgia. I picked up an infection 7 months ago while traveling through Asia and although most of the symptoms have gone, I am left with this overwhelming fatigue and constant aches in my legs.

I'm finding it really frustrating as the doctor has sent me away to try some antidepressants (something to do with helping the nerve endings?), but I tried one of those and the next day I felt even worse. I think I could cope with the aches in my legs if I could improve my energy levels, can anyone recommend a way to do this please????

I have tried a number of supplements including B Vitamins, D-Ribose, CoEnzyme Q10, Multivitamins and Iron, Vitamin C and Zinc, Evening Primrose, 5 HTP, Spirulina and Maca. I've also tried swimming and sort walks, but this is a real struggle. I used to be so active, and I don't know how I can go from that to struggling with a flight of stairs.

If anyone can please offer any advice on supplements, or anywhere I could find help that would be fantastic, thank you.

 

1 like, 37 replies

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  • david59662
    david59662 emma83518

    Posted

    Hi Emma, i'm aboit 6 months into my 'post viral fatigue' syndrome diagnosis. Remember being very unwell mid November, viral symptoms, penetrating stiffness in both legs, chest tightness, carrying on through till January with a slight improvement that month. So like you alot ofit is gone but lumbered with debilitating fatigue. I'm not a lazy person but you really feel like the stuffing has been knocked out of you, and i feel my heart is empty and weak. Legs still feeling unsteady. I'm especially bad in mornings. Prior to this i was a triathlete 6+years. I was also finding a flight of stairs difficult. It's been a shocking experience for me so far. I had to stop work. Consider myself partly disabled. Supplement wise i think you are doing well, i would say make sure you are using the more effective form of Q10 UQUIQUINOL, just started myself. You could look into using PQQ from life extension and rhodiola should be on your list aswell. NADH perhaps. I think with supplements we need to be on them regularly for about 8 weeks to know if they are working before giving up on them, as well as eating well. I've been eating very well 3000calories/day highly nutritious diet and i just cannot put on weight. I would also say to you to think about lyme disease testing and testing for parasitic infection ? I've just started herbs and acupuncture with a loal traditional 30+ years Chinese doctor, hope this can bring me on a bit. Total nightmare experience. I joined here a few months back i think and was really shocked to read s many people suffering like this. Maybe look at Dr.Myhills website with regards to chronic fatigue. Take care.
    • emma83518
      emma83518 david59662

      Posted

      Hi David, thank you so much for your advice. I've sort of lost faith in the healthcare system and finding this forum has definitely brought a bit of comfort and hope. I've been tested for lots of tropical diseases and deficiencies, but I will double check if they have tested me for Lymes and parasites. I'm glad the results have all been clear so far, but not knowing what exactly is happening is frustrating. Although friends and family are lovely, I don't think they really understand as I don't look ill! I'm definitely going to try acupuncture and those supplements. I hope your treatments have positive effects for you soon. Thank you again.
    • david59662
      david59662 emma83518

      Posted

      Thanks Emma, yes me too. I've lost about 6lbs, all muscle since the illness. I don't look particularly unwell but i know what i normally feel like and this is not it. Like you i am relieved my tests come back negative but in many ways it's frustrating to feel, to actually be so ill at 34 years old and they cannot properly diagnose you and offer treatment/s. The NHS is very poor, i'm sorry to say that's been my experience, in terms of taking you and your health seriously. Thewaiting times for me have been torturous and i often get the impression they feel i am making all this up. I mean a 10 minute GP appointment. I was offered anti-depressants, i mean, forget it ! I want to get well. I could'nt do this without the support of family, god knows what state i would be in.
    • emma83518
      emma83518 david59662

      Posted

      That's exactly it - it's such a slow process of getting appointments, and they often give the impression that they aren't taking you seriously. I know anti-depressants can help people in some situations, but it does seem like they hand them out for any problem hoping that you'll go away, rather than actually finding out the cause. I'm 33 and I feel like I'm 100, it really isn't normal. I've just had a look at the Perrin technique, it looks quite promising! I've read so many things on the internet about various causes and I have seen that the health of your spine can affect things. Have you tried probiotics? I've read that these can also help.  

       

    • david59662
      david59662 emma83518

      Posted

      Hey Emma, i'm 34, and like you feeling like 100. Especially moreso when i could run a marathon in under 3 hours. The TCM doctor says i have exhausted my kidney energy and have to replenish. So although i was sick with a virus maybe the virus was just natures way of getting me to slow down. Lord knows i am a high achiever, and always pushed myself especially the 2 years prior to becoming unwell. I've booked an appointment to see about the Prerrin Technique. I think that could work very well with TCM, herbs and acupuncture.
    • emma83518
      emma83518 david59662

      Posted

      I've been told that too, that it's natures way of telling me to rest! It could well be true, I possibly have pushed myself a bit too much over the years and maybe my body was already weak when I first became ill. I also suffered quite a bad virus 5 years ago, so maybe that's contributed too. I think because I was so healthy and active last year, it just doesn't seem to make a lot of sense. If you were running marathons it mustn't make much sense to you either! Your TCM doctor sounds quite helpful, and that's brilliant about your appointment for the Perrin Technique, I hope it helps you.

       

    • david59662
      david59662 emma83518

      Posted

      Thanks Emma, yes me too, before all this super healthy, juicing vegetables, eating all the right stuff none of the bad stuff. But i guess as i am learning this does not mean you can do what you want, which i did think i could. You still have to rest and recover, and recover is what i plan to do.
    • emma83518
      emma83518 david59662

      Posted

      You definitely seem to be heading down the right route to recovery! Thanks again for all of your help.

       

    • sally_14743
      sally_14743 david59662

      Posted

      Hi David just read your symptoms ... Have you been checked for diabeties ? It's just most people with CFS pile on the pounds ... But undiagnosed diabetis means your blood sugars through the roof and you feel extreme fatigue blurred vision aches in legs and brain fog similar to CFS but it's the weight loss as your body  can't process the sugar in your blood and starts to eat itself... I am only aware of this as my hubby who was recovering well from CFS took a sudden relapse in October and then in January started losing weight he was stuffing himself and he lost 21llbs in 4 months ... Doctor ignored symptoms as he hadCFS . Then they tested blood sugar with a fast 16.6 through the roof ... That was 3 weeks ago... Doctor said you've prob had it for 5 years but it hasn't shown on tests... That's why I said earlier don't ignore other symptoms ... You can have more than one thing ... Or you might not have CFS but have diabeties ... Just a thought. ... My hubby down to 7.2 now and feeling much better .. Still got CFS but so much better ... 
    • david59662
      david59662 sally_14743

      Posted

      Thanks. I'm sure i was tested. And the answer was no. I can re-test easilly with the nurse.
    • sally_14743
      sally_14743 david59662

      Posted

      Glad u were tested and ok. My hubby was tested regularly for it too and then it suddenly happened.. Do tell your doctor you can't put weight on there are other things ... To test for.. I keep hoping my husband has only got diabeties but I can tell he has both sad . But positively once his diabeties gets under control he can start to recover from CFS again ... 
    • sally_14743
      sally_14743 david59662

      Posted

      Yes get tested then. My husband got so used to every test being absolutely healthy . He was very shocked to have diabeties ...but glad to feel better . smile 
    • emma83518
      emma83518 david59662

      Posted

      Hi David, I've done a bit of research into NADH and it seems quite positive. Can you advise of a trusted company to buy from? They don't seem to sell it in Holland and Barratts, is it only available on the internet? Thanks

       

  • sally_14743
    sally_14743 emma83518

    Posted

    Ask to be referred to a chronic fatigue/M.E specialist . My husband was referred after 4 years of fatigue . He was told by his GP it looked liked chronic fatigue as all tests came back negative. It was a battle with the GP to get them to refer him they were negative saying the specialist wouldn't be able to do anything ? Well it was the best thing ever for him seeing a specialist who really did a whole medical history with him . Looked at his bloods explained the triggers ranging from virus , having major heart surgery. Accidents, etc. they have a criteria set by N.I.C.E by the government  where you have to fulfill most of the criteria. He did the look of relief on his face when he got diagnosed . Then she handed him over to occupational theraphy team who help you to recover by teaching you to pace yourself and how much exercise etc to do to prevent relapse. He has been given an epileptic drug to stop the pain and a anti depressant to aid sleep ... All drugs that suit CFS sufferers who are extremely sensitive to drugs . He is so positive now. After 4 years off trudging to work and function he ended up unable to work or have a social life .. Get the help now quick before you relapse further ... 
    • emma83518
      emma83518 sally_14743

      Posted

      Hi Sally, that's so good to hear that your husband is feeling more positive now. I didn't actually realise you could be referred to a specialist! My GP said that as it's a fairly new condition in the medicine world, they don't really know much about it - but I will be asking if I can be referred. At the moment I fluctuate between days when I think I'm recovering to feeling absolutely dreadful, so if I can stop this in its tracks that would be great. You must be such a great support for your husband, thank you for you help.

       

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